‘It gets easier, I promise’

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He smiled, eventually

These words make me cringe. I used to say this phrase all the time, thinking I was helping. But time has taught me it’s not true.

At the time, I didn’t know it was a lie. I made the mistake of thinking that my experience was the norm and that everyone would follow my path. That’s usually the mistake of the privileged, to assume that their experience is the only experience. In this case it wasn’t so much privilege as luck that was responsible for my naivety.

As the parent of a newly born and brain-injured child, left with a lifelong disability, I found myself seeking guidance and solace in Facebook groups. Despite a love-hate relationship with the platform, one thing FB is excellent at is connecting people going through similar  experiences. There is a Facebook group for almost everything.

In the early days after diagnosis and trauma, there is such comfort in talking to those who are walking your path, whether they are at the same point or far ahead. Those with more experience buoy up the newly traumatised and offer advice, empathy, a virtual shoulder to cry on. In time, you go from the frightened newbie to the supportive sister, a role I have taken on several times.

The heartbreak and loss you feel at first lessens with time and you learn to accept your new normal. The empathy I feel for those who land up in the group, newly shipwrecked on the shore of HIE is so deep and I so desperately want to let them know that the rawness will not last.

The first year is particularly rough. You are adjusting to life with a baby (if it’s your first), new acronyms (like HIE, NICU, SCBU, NG, OT, PT) are thrown at you, you see more of the health professionals than you do of friends and family and often your baby is unsettled, to put it mildly.

T cried for roughly 98% of his first year. He was diagnosed with cerebral palsy at three months and epilepsy at six months. It was rough. For anyone that knows me, I apologise. I may have mentioned this once or twice over the years. But as time went on, T did improve. In year two he cried for around 75% of the time, year three maybe 60%. He got happier and easier.

I assumed that was what all children with brain injuries did.

But of course, no two kids are the same. No two children, even with the same brain injury, the same pattern of damage, the same prognosis, are the same. They are just as individual as neurotypical kids.

Some develop epilepsy or other movement disorders; others have reflux, some get away without any.  Some need multiple meds, others wean off them completely. Some learn to feed, others get a tube. Housing issues get more complex, as do equipment needs. Occasionally a child who was once labelled unlikely to survive beats all odds and appears totally unscathed, even after a catastrophic MRI.

My child got easier and happier to care for. Others’ conditions worsened. Life got more stressful, not less. I’ve watched the mental health, relationships and careers of countelss parents take a nosedive instead of the promised upturn.

To the mums of these unendingly complex children: I’m sorry I sold you a lie. I honestly didn’t realise things could take a dive from what we all thought was rock bottom. But I look at you now and marvel at how far you’ve come and how much you have to deal with.

One thing that doesn’t change is that the rawness does fade. We all get a new normal, whatever that looks like.

Sometimes life doesn’t get easier. You just get better at coping with it.

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